Planning for the end of life: What baby Charlie can teach us

Charlie Gard was a one-year-old boy who had a rare genetic disease leaving him blind, comatose, and unable to breathe on his own. This metabolic disorder can be fatal and has no known cure.

Charlie’s parents wanted him treated with experimental drugs in the hope that a miracle would happen. As reported in the press, the British medical and legal community considered this care futile and blocked it.

This sad story created a flurry of public discussion about ethics, end of life care, and patient and parent autonomy. Experts debated the wisdom of the parents’ decision. The discussion centered on whether the experimental therapy would help Charlie or make him suffer more.

These “end of life” issues have evolved during medicine’s successes over the last 50 years. Thanks to life-saving advances, premature infants have been saved. Organ transplants have given new life to patients with failing lungs, heart, kidneys, and livers. Many cancers are now curable.

However, there are limits to what medicine can do. Full recovery is rare among patients who have multiple-organ failure or advanced chronic disease. This raises the important issue of length of life versus quality of life.

As an intensive care physician, I have treated many patients facing this challenge. These situations are exceedingly difficult for everyone: patients, their families, and their medical teams. Emotions are magnified even more when the patient is young and/or cannot speak their wishes.

The major question for a critically ill patient is, “What happens next?” Sometimes, nature sends clear signals: the patient does not respond to maximum therapy, or there is no sign of brain activity. But more often the situation is uncertain. The patient may enter the twilight zone of the “chronically critically ill.” Such patients, who are often comatose, can be kept alive by machines that inflate the lungs, pump the heart, and dialyze the blood — all in the hope of a major recovery.

Research has shown that patients who need such advanced life support for many days have a grave prognosis. Those few who survive and leave the hospital usually die within one year and most never achieve full function. Physicians and families find it hard to know how aggressively to treat such patients without understanding their wishes.

This situation is preventable. While 90 percent of patients feel that they should discuss end-of-life plans with their family, only 27 percent actually do so. Knowing such plans in advance is invaluable for developing a treatment plan that respects the patient’s wishes. However, unless patients tell their families beforehand, how can anyone know?

Fortunately, progress is being made, thanks to public support and resources such as The Conversation Project. This advocacy program encourages everyone to “have the conversation“ with family when there is no pressure to make a hasty decision. The group’s website has helpful information and tools to guide the discussion. As some experts have written, we make plans for our estates — why not include our end-of-life wishes?

Charlie Gard’s parents were in a very difficult situation. They had to make a decision about his care and initially defied the medical/legal community by choosing aggressive therapy. Many supporters, including Pope Francis and President Trump, rallied to endorse the parents’ position.

That was before the medical facts became clear. According to published reports, experts agreed that Charlie’s disease had permanently damaged his brain and that he would never awaken or breathe on his own. The experimental therapy would not reverse his current state of suffering but could possibly make it worse.

Once they understood these facts, Mr. and Mrs. Gard chose to remove their young son from life support, and he died peacefully. We can sympathize with their painful and loving effort.

The Gard story has a message for us all. As a comatose child, Charlie could not speak about end-of-life decisions — but, as adults, we can. It is important to remember that the end of life is inevitable and that we will all experience it some day.

Having “the conversation” can relieve our loved ones from a responsibility that rightfully belongs to us. It may be the most important gift we can give them.

Mark Kelley is a pulmonologist and founder, HealthWeb Navigator, where this article originally appeared.